Vagus Nerve Stimulator (VNS) for Seizures

For several years we talked time and time again about the option of getting a Vagus Nerve Stimulator for our daughter Emily. We were told that she had the kind of seizures that would respond well to the VNS. However, these conversations began when Emily was less than a year old. At the time the current VNS devices that was on the market was about the size of a half-dollar. We saw how big the VNS was an realized that it would consume most of Emily's little chest. Not to mention the fact that the surgery for it would have required the neurosurgeon to make a vertical incision on her little neck just to be able to find and expose her vagus nerve. Those two things pretty much turned us off of the idea of even having the surgery.

When Emily was around three years old the maker of the VNS, Cyberonics, release a new and much smaller device that is about the size of a quarter. By this time Emily was having literally hundreds of seizures a day with no help from the six medications that she was taking. Emily has also been on all but four seizure medications available in the US and Canada and not one has been able to control her seizures. Unfortunately, each of the medications that she takes helps to some degree, but now what were we to do? So we finally decided it was time to have the VNS implanted in Emily to see if that could help control her seizures.

The recovery from the surgery was a tough one for Emily, but we anxiously awaited to be able to turn on the VNS. After a month or so we finally got to turn it on and right away we could tell it was working in some way. Emily seemed more alert and happier. I should mention that the VNS is also used to treat depression, so this could have been helping Emily in that sense as well.

After a little while at the starting frequency we brought Emily back in for adjustments to the VNS. We increased both the amount of time it is on and how intense the stimulation is. Emily didn't seem to mind the amount of time the stimulator was on and off, but she did not do well when the stimulation was turned up to 1.0 milleamperez. She would cry every time the VNS would turn on and her drooling got so bad that it was pouring out of her mouth and she was chocking on it. So we had it turned back down to .75 milleamperez and she did much better.

It has almost been one year since Emily got the VNS and I can truthfully say that it was a very good decision. We talked to many families that had kids with the VNS similar to Emily's story and many had negative things to say about the VNS. But for Emily it has been great at helping with her seizures and her overall mood.

For more information about Emily and her VNS experience please contact me directly. Thanks!

KristyK